Tuesday, March 18, 2014
The Waiting Game Continues
It has been too long. Way too long.
I've been on antibiotics for, what, 5 months now? Has it been that long? Yes, I think it has. I had a repeat CT scan in January which showed my Actinomycosis was about half-cleared. Half-cleared or half-remaining? I've always been a "glass half-full" kind of gal. The good news is that it is getting better.
My Pulmonologist gave the impression that the lymphoma was officially gone when he got the bronch results back in October, but he & the Oncologist have decided that a repeat PET scan will really be the only way to make sure that one pesky lymph node was just reactive due to infection and not lymphoma.
And so we continue to wait...
My medical team has been awesome. My Pulm is working closely with my Medical Onco and an Infectious Diseases doc. I do have one less member of my medical team now. I was released from my radiation onco at my last appointment with her (which, IIRC, was in December).
I have an appointment with my medical onco on Thursday (just for routine bloodwork and to check in). I see my pulm again in April after a repeat CT to check the infection status. Hopefully it's gone! Then we can do a repeat PET and, fingers crossed, finally put an end to this whole NHL nonsense.
Thursday, October 24, 2013
Best Update Yet!
FINALLY, OFFICIALLY CANCER FREE!
WHOOP!
I had my bronchoscopy done several weeks ago. Last Thursday, the pulmonologist called to tell me that there was no evidence of lymphoma in my lung!
My pain/shortness of breath is caused by an infection in & around my lung. Actinomyces bacteria normally lives in your mouth & gastrointestinal tract. But since my immune system was down from chemo & radiation and the right lung was damaged from the lymphoma & radiation therapy (mostly scarring), my lung became infected. The symptoms I am/was having (shortness of breath, cough, phlegm, night sweats, low fever) were really causing a lot of worry since all were symptoms I had when I was first diagnosed with ALCL, but they also happen to be the SAME symptoms caused by Pulmonary Actinomycosis.
Now our concentration is on kicking this infection out! I am on a long cycle of amoxicillin. I take 2000 mg per day (500 mg 4x daily) and will be taking it for 6-12 months.
And in other FANTASTIC news:
My youngest sister just gave birth to her first baby boy! He was born at a healthy 7lbs 5oz, and Mommy & baby are both doing great! They were released from the hospital today! Congrats to Amanda & David, and welcome to the world, baby Waylen! I can hardly wait to hold you!
Monday, September 23, 2013
And The Saga Continues...
WOW! It's been a while!
The kids & I had an absolute FANTASTIC time in Louisiana. We were there almost a month. We saw old friends, made new friends, ate lots of not-so-good-for-you-but-delicious food, and just had a really great time.
While in LA, I was keeping a close eye on a lump in my neck. When we got home, I made an appointment with my oncologist, who sent me for a CT scan. It showed that the lump was probably just scar tissue from my biopsy and that it looked like I had a touch of pneumonia in my right lung. No big deal since I was feeling well.
Then I developed a cough. I ran a fever for several days. I thought I had just caught a bug that I couldn't shake. That, along with a little back pain, was enough for me to call the doc again. About 3.5 weeks ago, my oncologist sent me for another x-ray. He said my x-rays looked the same. After discussing the results with the radiologist, they determined that I had Radiation Pneumonitis. Since I was right at the 6 month mark after radiation, they thought that was the obvious answer. Since I was fast-approaching the date of my 12 week post-op PET scan, he decided to treat me with 2 weeks of antibiotics, so that any infection would be gone & not mess up my scan. I finished my antibiotic the day of the scan.
Last Wednesday was the PET scan. Friday was my follow-up. The doc said the stupid lymph node is STILL lighting up on the scan. The good news is that it hasn't grown. We don't know why it's lighting up though. And now the spot of what we thought was pneumonia or pneumonitis has gotten more dense. What is that? We don't know. Infection (viral, fungal, bacterial)? Cancer? We just don't know.
My oncologist spoke with and made me an appointment with a Pulmonologist. He is going over my films this week & I meet with him on Thursday. We'll decide the next step then. The oncologist thinks the pulmonologist will want to do a bronchoscopy to try to get a sample of whatever this is. We're going to leave the lymph node alone right now because a biopsy on it means a wire-guided open biopsy (which, IMO, sounds like no fun at all).
Back to the waiting game.
The kids & I had an absolute FANTASTIC time in Louisiana. We were there almost a month. We saw old friends, made new friends, ate lots of not-so-good-for-you-but-delicious food, and just had a really great time.
While in LA, I was keeping a close eye on a lump in my neck. When we got home, I made an appointment with my oncologist, who sent me for a CT scan. It showed that the lump was probably just scar tissue from my biopsy and that it looked like I had a touch of pneumonia in my right lung. No big deal since I was feeling well.
Then I developed a cough. I ran a fever for several days. I thought I had just caught a bug that I couldn't shake. That, along with a little back pain, was enough for me to call the doc again. About 3.5 weeks ago, my oncologist sent me for another x-ray. He said my x-rays looked the same. After discussing the results with the radiologist, they determined that I had Radiation Pneumonitis. Since I was right at the 6 month mark after radiation, they thought that was the obvious answer. Since I was fast-approaching the date of my 12 week post-op PET scan, he decided to treat me with 2 weeks of antibiotics, so that any infection would be gone & not mess up my scan. I finished my antibiotic the day of the scan.
Last Wednesday was the PET scan. Friday was my follow-up. The doc said the stupid lymph node is STILL lighting up on the scan. The good news is that it hasn't grown. We don't know why it's lighting up though. And now the spot of what we thought was pneumonia or pneumonitis has gotten more dense. What is that? We don't know. Infection (viral, fungal, bacterial)? Cancer? We just don't know.
My oncologist spoke with and made me an appointment with a Pulmonologist. He is going over my films this week & I meet with him on Thursday. We'll decide the next step then. The oncologist thinks the pulmonologist will want to do a bronchoscopy to try to get a sample of whatever this is. We're going to leave the lymph node alone right now because a biopsy on it means a wire-guided open biopsy (which, IMO, sounds like no fun at all).
Back to the waiting game.
Monday, July 1, 2013
And Now We Wait
A lot has happened since my last post. It's been quite a whirlwind. And now that I am completely unmedicated for the first time in over a week, I thought I'd post about everything.
On June 12, I had an unsuccessful needle biopsy on the suspicious node in my neck. Despite 2 doctors, at least 10 trips in and our of the CT machine, an ultrasound, 2 giant needles in my neck, and 1.5 hours of pocking & prodding, they were unable to get a tissue sample. The node is hard & rubbery, and the doc was unable to get the needle inside it. He stopped because he said it was getting too dangerous to continue around all of the arteries/veins/nerves.
I met with my ENT the following day & she scheduled me for a CT scan, which happened on 6/14. On 6/21, I went under the knife for an excisional biopsy. She also diagnosed me with tonsil stones. GROSS! So, in addition to the biopsy on my neck, she also took my tonsils out!
That biopsy also did not go as planned. There were two big nerves the doc was concerned with (one for my shoulder & one for my diaphragm), so she was being extra careful. She told Nathan she got a good amount of tissue from around the site of the needle biopsy, but wasn't sure if she got from the suspicious node.
And...she didn't. The node she got was 0.33 cm (normal size), reactive (showing inflammation), but benign. HOORAY for that! But the node she was going for is still in there. And we still don't know any more than we did from the initial PET scan.
I met with my oncologist Friday. He was much more optimistic, as the node doesn't seem to have grown any. The type of lymphoma I had (have...had...whatever) is considered aggressive and fast growing. It's a great thing that the node is still only about 1 cm (as seen at my 8 week PET scan and again on my CT scan on 6/13).
We have decided to take the wait & watch approach since we've tried so much lately. A PET scan would be unreliable now because of the surgery. It would probably light up like a Christmas tree because of all of the inflammation in there now. My neck needs a break!
So...we wait. I go to the ENT on the 9th for another post-op check-up on my neck & tonsils. Then I go for blood work & to see the onco at the beginning of August. I will also schedule a PET scan for 12 weeks out from the last surgery.
In the meantime, the kids and I are very excited about our upcoming trip! We will be leaving for Louisiana on 7/10! We're staying for a few weeks & hope to do lots of relaxing and lots of visiting!
On June 12, I had an unsuccessful needle biopsy on the suspicious node in my neck. Despite 2 doctors, at least 10 trips in and our of the CT machine, an ultrasound, 2 giant needles in my neck, and 1.5 hours of pocking & prodding, they were unable to get a tissue sample. The node is hard & rubbery, and the doc was unable to get the needle inside it. He stopped because he said it was getting too dangerous to continue around all of the arteries/veins/nerves.
I met with my ENT the following day & she scheduled me for a CT scan, which happened on 6/14. On 6/21, I went under the knife for an excisional biopsy. She also diagnosed me with tonsil stones. GROSS! So, in addition to the biopsy on my neck, she also took my tonsils out!
That biopsy also did not go as planned. There were two big nerves the doc was concerned with (one for my shoulder & one for my diaphragm), so she was being extra careful. She told Nathan she got a good amount of tissue from around the site of the needle biopsy, but wasn't sure if she got from the suspicious node.
And...she didn't. The node she got was 0.33 cm (normal size), reactive (showing inflammation), but benign. HOORAY for that! But the node she was going for is still in there. And we still don't know any more than we did from the initial PET scan.
I met with my oncologist Friday. He was much more optimistic, as the node doesn't seem to have grown any. The type of lymphoma I had (have...had...whatever) is considered aggressive and fast growing. It's a great thing that the node is still only about 1 cm (as seen at my 8 week PET scan and again on my CT scan on 6/13).
We have decided to take the wait & watch approach since we've tried so much lately. A PET scan would be unreliable now because of the surgery. It would probably light up like a Christmas tree because of all of the inflammation in there now. My neck needs a break!
So...we wait. I go to the ENT on the 9th for another post-op check-up on my neck & tonsils. Then I go for blood work & to see the onco at the beginning of August. I will also schedule a PET scan for 12 weeks out from the last surgery.
In the meantime, the kids and I are very excited about our upcoming trip! We will be leaving for Louisiana on 7/10! We're staying for a few weeks & hope to do lots of relaxing and lots of visiting!
Friday, June 7, 2013
8 Week Post Treatment Check-up
Wednesday I had my 8 week post-radiation PET scan and bloodwork. Today was my check-up with the medical oncologist.
I got news I wasn't anticipating. A spot show up on my PET scan. It was not there at my last scan (after chemo, but before radiation), but it is there now. It's about 1 cm and is located in the same spot as the original mass. My doctor did not seem confident that this spot was not cancerous. He said that if it hadn't shown up so brightly on the scan, he would have blown it off as inflammation/infection, but he is very concerned about it.
So, right now the game plan is a needle biopsy next week (scheduled for Wednesday, June 12). There are only two Interventional Radiologists in Richmond that my oncologist likes for the job, so I took the first available appointment with one of them.
If the biopsy comes back positive, we move to a new, stronger chemotherapy. If it comes back negative, we move to an excisional biopsy, because in the doctor's words, "I won't trust a needle biopsy if it comes back negative." They will attempt to remove as much of the lymph node as possible to biopsy it. Given the location of the node, removal is still iffy though.
We didn't talk about many details right now. We talked briefly about chemotherapy requiring hospitalization and a bone marrow transplant, but we decided to hold off on all that until after next week's biopsy.
I got news I wasn't anticipating. A spot show up on my PET scan. It was not there at my last scan (after chemo, but before radiation), but it is there now. It's about 1 cm and is located in the same spot as the original mass. My doctor did not seem confident that this spot was not cancerous. He said that if it hadn't shown up so brightly on the scan, he would have blown it off as inflammation/infection, but he is very concerned about it.
So, right now the game plan is a needle biopsy next week (scheduled for Wednesday, June 12). There are only two Interventional Radiologists in Richmond that my oncologist likes for the job, so I took the first available appointment with one of them.
If the biopsy comes back positive, we move to a new, stronger chemotherapy. If it comes back negative, we move to an excisional biopsy, because in the doctor's words, "I won't trust a needle biopsy if it comes back negative." They will attempt to remove as much of the lymph node as possible to biopsy it. Given the location of the node, removal is still iffy though.
We didn't talk about many details right now. We talked briefly about chemotherapy requiring hospitalization and a bone marrow transplant, but we decided to hold off on all that until after next week's biopsy.
Wednesday, May 8, 2013
Not Being Sick ROCKS!
I feel good! I feel great!
Not driving back & forth to the hopsital is fabulous! I am so glad chemo & radiation are OVER!
My hair is coming back full force now. I am almost to "cute Pixie cut" status. It's still a bit short, but it can actually get messed up again! Yes...BED HEAD!
And in other news:
I have started exercising again. 3-4 days at the gym doing the elliptical, weights, or walking. My awesome friend likes to take long walks with me. She knows how to push me! We take 4.5 mile walks together. It's so great to have someone to talk to. It makes the time go by so quickly!
I start Weight Watchers almost 2 weeks ago. The first week (well, not a full week, but they kept my weigh day the same from last time), I gained a few ounces. But today was weigh day again (after my first full week) and I lost 2.4 lbs! WOOHOO! If I keep up the 2lb loss per week, that means I will be 20 lbs lighter by our trip to LA in July. I just hope I can keep it up. I have been drinking a ton of water & really working on not boredom snacking. And I am starting a new hobby...CYCLING! Yeah...well, not serious cycling. I just bought myself an awesomely cute beach cruiser. I can hardly wait to get it! It should be in at the bike shop tomorrow!
Not driving back & forth to the hopsital is fabulous! I am so glad chemo & radiation are OVER!
My hair is coming back full force now. I am almost to "cute Pixie cut" status. It's still a bit short, but it can actually get messed up again! Yes...BED HEAD!
And in other news:
I have started exercising again. 3-4 days at the gym doing the elliptical, weights, or walking. My awesome friend likes to take long walks with me. She knows how to push me! We take 4.5 mile walks together. It's so great to have someone to talk to. It makes the time go by so quickly!
I start Weight Watchers almost 2 weeks ago. The first week (well, not a full week, but they kept my weigh day the same from last time), I gained a few ounces. But today was weigh day again (after my first full week) and I lost 2.4 lbs! WOOHOO! If I keep up the 2lb loss per week, that means I will be 20 lbs lighter by our trip to LA in July. I just hope I can keep it up. I have been drinking a ton of water & really working on not boredom snacking. And I am starting a new hobby...CYCLING! Yeah...well, not serious cycling. I just bought myself an awesomely cute beach cruiser. I can hardly wait to get it! It should be in at the bike shop tomorrow!
Monday, April 22, 2013
The Latest Update
Done! Finished! Completed!
22 radiation treatments are done! April 8 ended up being the END of my radiation treatments. My onco extended treatment by two days. I found out about that on day 19, which was suppose be be my next-to-last treatment. I cried like a big baby. And I mean ugly cry.
A few days after treatment ended, the blisters showed up. First on my back. Then on my neck. And it was NOT pretty. But here I am two weeks out, almost completely healed. I have some peeling & one spot still cracking on my neck, but it's MUCH better. My throat is also on the mend. I still have some swallowing pain, but it is nothing compared to the worst I had.
Saturday, we had an amazing time with great friends & family to celebrate. We had real love Louisiana crawfish shipped in & showed our VA friends how it's done! Such a fun time!
Upcoming appointments:
May 21 - 6 week follow-up with radiation oncologist
May 22 - PET scan
may 24 - follow-up with medical oncologist
22 radiation treatments are done! April 8 ended up being the END of my radiation treatments. My onco extended treatment by two days. I found out about that on day 19, which was suppose be be my next-to-last treatment. I cried like a big baby. And I mean ugly cry.
A few days after treatment ended, the blisters showed up. First on my back. Then on my neck. And it was NOT pretty. But here I am two weeks out, almost completely healed. I have some peeling & one spot still cracking on my neck, but it's MUCH better. My throat is also on the mend. I still have some swallowing pain, but it is nothing compared to the worst I had.
Saturday, we had an amazing time with great friends & family to celebrate. We had real love Louisiana crawfish shipped in & showed our VA friends how it's done! Such a fun time!
Upcoming appointments:
May 21 - 6 week follow-up with radiation oncologist
May 22 - PET scan
may 24 - follow-up with medical oncologist
Tuesday, April 2, 2013
WOW! It's Been A While
I told you I suck at this blogging thing.
Since my last update, I have completed 15 more radiation treatments. TWO MORE! Yes...Thursday will be the LAST of my 20 treatments! I will be so glad to wake up Friday morning with nowhere to go! I have memorized every curve (and believe me, there are many) of the road to the hospital.
Emory has been an absolute sweetie during treatments. He has sat in the waiting area outside the room at almost every one of my visits. He has made friends with the therapy dog at the cancer center. When she sees me over the counter, she jumps up because she knows my little one is just out of sight beside me. He loves giving her treats. He always says, "Bye, Bay. We'll see you tomorrow!"
Side effects that I have experienced:
Sore throat - imagine the worst sore throat you've ever had. Now imagine it lasting for 3+ weeks. The only thing I can eat comfortably is lukewarm chicken broth. Everything else cause pain. Some foods, like bread, can bring me to tears. Even pudding is hard to swallow. After a version of Magic Mouthwash failed to help, we resorted to Percocet, which does nothing except make me sleep.
Red skin - I look like I have a sunburn on half of my neck, half of my chest, and half of my back. You can actually physically see where the radiation field starts & stops. It doesn't hurt & hasn't blistered, but it itches like crazy!
Fatigue - So what else is new? Thankfully, my youngest (who stays at home) is very accommodating to my nap schedule.
My hair is growing back. Like...really quickly. Been taking lots of pics. You can find them on FB if you are a friend. I'll post pics later.
Since my last update, I have completed 15 more radiation treatments. TWO MORE! Yes...Thursday will be the LAST of my 20 treatments! I will be so glad to wake up Friday morning with nowhere to go! I have memorized every curve (and believe me, there are many) of the road to the hospital.
Emory has been an absolute sweetie during treatments. He has sat in the waiting area outside the room at almost every one of my visits. He has made friends with the therapy dog at the cancer center. When she sees me over the counter, she jumps up because she knows my little one is just out of sight beside me. He loves giving her treats. He always says, "Bye, Bay. We'll see you tomorrow!"
Side effects that I have experienced:
Sore throat - imagine the worst sore throat you've ever had. Now imagine it lasting for 3+ weeks. The only thing I can eat comfortably is lukewarm chicken broth. Everything else cause pain. Some foods, like bread, can bring me to tears. Even pudding is hard to swallow. After a version of Magic Mouthwash failed to help, we resorted to Percocet, which does nothing except make me sleep.
Red skin - I look like I have a sunburn on half of my neck, half of my chest, and half of my back. You can actually physically see where the radiation field starts & stops. It doesn't hurt & hasn't blistered, but it itches like crazy!
Fatigue - So what else is new? Thankfully, my youngest (who stays at home) is very accommodating to my nap schedule.
My hair is growing back. Like...really quickly. Been taking lots of pics. You can find them on FB if you are a friend. I'll post pics later.
Monday, March 11, 2013
I Told You I Suck At This
Man, I really do suck at blogging. You'd think with as much time as I spend online that I'd at least come & update you.
So, since my last update:
February 1 (the date of my last update) was indeed my LAST chemo treatment!
February 20, I had my repeat PET scan.
February 22, my medical oncologist told me the cancer is GONE! WOOHOO! He said I have a spot of about 1 cm that looks like scar tissue. We celebrated with lunch and then again with dinner (b/c the big kids were at school)!
February 25, I met with my radiation oncologist and got set up for radiation, which included two new tattoos (they are small, but I got ink'd). She said radiation is to blast that 1 cm area where cancer cells could be hiding & to get any other bad cells that may be lurking.
I scheduled to have my port removed on February 28, but Evie got sick, so I rescheduled.
February 28 - Happy Birthday, Evie!
March 2 - Guess who turned 35?! And we had a FABULOUS time at Evie's Spa-la-la birthday party!
March 4 - I got my port removed! WOOHOO!
March 5 - First radiation treatment
March 6-7 - SNOW DAY! Radiation #2 would have to wait. Snow day followed by a day b/c the machine was broken. FUN!
March 8 - Radation resumed.
That brings us to now. I had rad treatment #3 today. 3 down/17 to go!
So far, no side effects of radiation. I meet with the radiation onco tomorrow after my treatment.
So, since my last update:
February 1 (the date of my last update) was indeed my LAST chemo treatment!
February 20, I had my repeat PET scan.
February 22, my medical oncologist told me the cancer is GONE! WOOHOO! He said I have a spot of about 1 cm that looks like scar tissue. We celebrated with lunch and then again with dinner (b/c the big kids were at school)!
February 25, I met with my radiation oncologist and got set up for radiation, which included two new tattoos (they are small, but I got ink'd). She said radiation is to blast that 1 cm area where cancer cells could be hiding & to get any other bad cells that may be lurking.
I scheduled to have my port removed on February 28, but Evie got sick, so I rescheduled.
February 28 - Happy Birthday, Evie!
March 2 - Guess who turned 35?! And we had a FABULOUS time at Evie's Spa-la-la birthday party!
March 4 - I got my port removed! WOOHOO!
March 5 - First radiation treatment
March 6-7 - SNOW DAY! Radiation #2 would have to wait. Snow day followed by a day b/c the machine was broken. FUN!
March 8 - Radation resumed.
That brings us to now. I had rad treatment #3 today. 3 down/17 to go!
So far, no side effects of radiation. I meet with the radiation onco tomorrow after my treatment.
Friday, February 1, 2013
The Last One?
Today, I had what very well may be my LAST chemo treatment! WOOHOO!
Doc said we'll do a repeat PET scan in about 3 weeks (they do them on Wednesday, so either 2.5 or 3.5 weeks). What it shows will determine our next move. Cancer = more, different chemo. No cancer = radiation treatments. He said he's about 80-85% sure the cancer will be GONE!
No other news. Well, my fingertips keep going numb. I had a ridge on every single one of my fingernails. I have about a billion hang nails that I'm not supposed to pull/cut. My stupid monthly visitor showed up yesterday. And I'm feeling about 51 shades of grey. Just nausea. No vomiting. I did take a killer nap today though.
Next appointments:
2/3/13 - Nuelasta shot
TBA - PET scan
Yeah...not the most entertaining blog post, but whatever.
Doc said we'll do a repeat PET scan in about 3 weeks (they do them on Wednesday, so either 2.5 or 3.5 weeks). What it shows will determine our next move. Cancer = more, different chemo. No cancer = radiation treatments. He said he's about 80-85% sure the cancer will be GONE!
No other news. Well, my fingertips keep going numb. I had a ridge on every single one of my fingernails. I have about a billion hang nails that I'm not supposed to pull/cut. My stupid monthly visitor showed up yesterday. And I'm feeling about 51 shades of grey. Just nausea. No vomiting. I did take a killer nap today though.
Next appointments:
2/3/13 - Nuelasta shot
TBA - PET scan
Yeah...not the most entertaining blog post, but whatever.
Wednesday, January 23, 2013
The Wonderful World Of Radiation
A week ago, Nathan & I met with the radiation oncologist. Yes...that's a completely different doctor from my medical oncologist. Who knew?
Anyway, it has taken about a week for all of the info to sink in. Radiation does NOT sound like much fun. My doc says that it looks like I'll be getting 5 weeks of radiation. That's 5 weeks, 5 days a week. 25 times. 25 trips to the cancer center for 5-10 minutes of treatment.
The doc went over all of the potential side-effects (dry, red skin, sore throat/difficulty swallowing, fatigue, fibrosis, etc.) and then the odds of developing secondary cancer (like breast cancer). Fun!
After my next chemo treatment on 2/1, we will schedule a repeat PET scan. That will determine whether I am done with chemo or not. If I am, radiation will begin. If I'm not, well...we'll cross that bridge when we get there.
In other news...Yesterday we celebrated Emory's 4th birthday! He is such a big boy!
Anyway, it has taken about a week for all of the info to sink in. Radiation does NOT sound like much fun. My doc says that it looks like I'll be getting 5 weeks of radiation. That's 5 weeks, 5 days a week. 25 times. 25 trips to the cancer center for 5-10 minutes of treatment.
The doc went over all of the potential side-effects (dry, red skin, sore throat/difficulty swallowing, fatigue, fibrosis, etc.) and then the odds of developing secondary cancer (like breast cancer). Fun!
After my next chemo treatment on 2/1, we will schedule a repeat PET scan. That will determine whether I am done with chemo or not. If I am, radiation will begin. If I'm not, well...we'll cross that bridge when we get there.
In other news...Yesterday we celebrated Emory's 4th birthday! He is such a big boy!
Sunday, January 13, 2013
It's Me Again!
Hi, it's me again.
The chick with the cancer.
The bald chick.
Yeah...that chick.
What's been going on in the lovely state of VA? Chemo, that's what. Round 3. The one I have NOT looked forward to.
My oncologist sat & listened to all of my concerns. He assured me that some of the things I've heard won't happen to me because it's different medicine. But that I should be concerned about others. What kinds of things, you ask?
Fingernails - my body may, at any moment, decide that my fingernails need to go. At this point, they are no different than hair.
Fatigue - I believe his exact words were, "Fatigue is cumulative" which is doc speak for "You're gonna be f'ing tired for a long time."
Tingling feet/hands - This fun side-effect started last night. It wasn't so much a tingle as it felt like someone lit the bottom of my foot on fire. Sure, some may call that a tingle. I call it pain.
Illness - It's flu season people. Peak flu season. And VA has widespread flu this year. How do I avoid getting the flu? Doc says treat everything I touch like it has the flu. Treat everyone I meet in a store, restaurant, on the street, like they have the flu. Avoid shopping/people altogther if possible. This can be done. Face it...there aren't too many people I like anyway. And I have online shopping, and a husband who can follow a list like you would not believe!
My period - Sure, no one wants to talk about the blood bath in the middle of the month. Mine was supposed to disappear. And for a few glorious days, I thought it had. And then that bitch snuck up on me and WHAM! Go get a pad, lady. You're gonna need it. I relayed this info to the nurse, along with the number of times I empty my bladder & bowels, because these people LOVE to hear all of the juicy details. The doctor walked in and said, "I hear we had a travesty." I said, "Yes, my period. Dammit."
Anyway, away from bodily functions to chemo #3.
Someone explain to me how I got stuck with the nurse from hell? It doesn't really drum up lots of confidence when she has to keep asking what to do and where stuff is. Now, I know all nursing wards are different and you aren't used to things yet, but still. I do not want to be the guinea pig when dealing with the chemicals that are chemotherapy.
When accessing my port, which she must not do much in her inpatient surgical ward, she missed. Missed. Yes...MISSED my port with that giant fucking needle in her hand. And I do not exaggerate when I say this needle is at least 2" long. Quite possibly even longer. It got in with little more than the feeling of pressure/no pain thanks to my awesome numbing cream that I apply before going in. Sounds okay, right? I didn't feel it MISS, so it couldn't have been that bad, right? WRONG! When the nurse started trying to make sure the blood would come out, I got a horrible "OMG! OMG! PAIN! SOMETHING IS WRONG!" kind of pain in my chest. So, she sits with this needle half in/half out while trying to figure out WTH to do with me. She needed a new tray, but couldn't leave me hanging (literally). Thank goodness Nurse Jackie came to the rescue. And thank goodness Nurse Jackie watched over her should like a freakin' hawk when she accessed the port again. And thank goodness Nurse Jackie was our 2nd med checker before the newbie started infecting me with poison.
After I was done with meds, I walked a few laps around the infusion center to get my BP back up. No way was I giving them a reason to keep me any longer!
Friday night wasn't bad. I ate. All good. Nausea was minimal.
Saturday consisted of lots of sleeping. Tried to eat, but didn't get much down. Nausea was a little worse.
Sunday, Neulasta shot at 8:30 am at a hospital an hour away, which meant we had to get the kids up at 6:30. Fun. Did a quick shopping trip through Dollar Tree, picking up only what I needed, leaving behind anything that looked like it could contain the flu bug. Much hand sanitizer was used. We got home to find our power out. It stayed out for, what, 5 hours? Grilled some burgers. YAY for protein! I napped. The kids played outside. Ate some chicken & rice. Some came back for round two. Nausea varies depending on position. As long as I don't turn my head from side to side, stand up, sit down, turn around, or walk, I'm okay ;)
So, tomorrow, I fully expect some sore bones. If not tomorrow, in the coming days. I'm sure those days will consist of lots of heating pads, pain meds, and naps. Hopefully the little guy cooperates.
Upcoming appointments:
Wednesday, Jan 16 - Radiation Oncologist to discuss possible radiation
Friday, Feb. 1 - Chemo #4 - quite possibly the LAST ONE!
2-3 weeks after chemo, repeat PET scan to see what's left (hopefully NOTHING)
Peace out...
Suzi
P.S. Excuse the rambling, run-on sentences, and occasional misspelled word. My Ambien is kickin' in!
The chick with the cancer.
The bald chick.
Yeah...that chick.
What's been going on in the lovely state of VA? Chemo, that's what. Round 3. The one I have NOT looked forward to.
My oncologist sat & listened to all of my concerns. He assured me that some of the things I've heard won't happen to me because it's different medicine. But that I should be concerned about others. What kinds of things, you ask?
Fingernails - my body may, at any moment, decide that my fingernails need to go. At this point, they are no different than hair.
Fatigue - I believe his exact words were, "Fatigue is cumulative" which is doc speak for "You're gonna be f'ing tired for a long time."
Tingling feet/hands - This fun side-effect started last night. It wasn't so much a tingle as it felt like someone lit the bottom of my foot on fire. Sure, some may call that a tingle. I call it pain.
Illness - It's flu season people. Peak flu season. And VA has widespread flu this year. How do I avoid getting the flu? Doc says treat everything I touch like it has the flu. Treat everyone I meet in a store, restaurant, on the street, like they have the flu. Avoid shopping/people altogther if possible. This can be done. Face it...there aren't too many people I like anyway. And I have online shopping, and a husband who can follow a list like you would not believe!
My period - Sure, no one wants to talk about the blood bath in the middle of the month. Mine was supposed to disappear. And for a few glorious days, I thought it had. And then that bitch snuck up on me and WHAM! Go get a pad, lady. You're gonna need it. I relayed this info to the nurse, along with the number of times I empty my bladder & bowels, because these people LOVE to hear all of the juicy details. The doctor walked in and said, "I hear we had a travesty." I said, "Yes, my period. Dammit."
Anyway, away from bodily functions to chemo #3.
Someone explain to me how I got stuck with the nurse from hell? It doesn't really drum up lots of confidence when she has to keep asking what to do and where stuff is. Now, I know all nursing wards are different and you aren't used to things yet, but still. I do not want to be the guinea pig when dealing with the chemicals that are chemotherapy.
When accessing my port, which she must not do much in her inpatient surgical ward, she missed. Missed. Yes...MISSED my port with that giant fucking needle in her hand. And I do not exaggerate when I say this needle is at least 2" long. Quite possibly even longer. It got in with little more than the feeling of pressure/no pain thanks to my awesome numbing cream that I apply before going in. Sounds okay, right? I didn't feel it MISS, so it couldn't have been that bad, right? WRONG! When the nurse started trying to make sure the blood would come out, I got a horrible "OMG! OMG! PAIN! SOMETHING IS WRONG!" kind of pain in my chest. So, she sits with this needle half in/half out while trying to figure out WTH to do with me. She needed a new tray, but couldn't leave me hanging (literally). Thank goodness Nurse Jackie came to the rescue. And thank goodness Nurse Jackie watched over her should like a freakin' hawk when she accessed the port again. And thank goodness Nurse Jackie was our 2nd med checker before the newbie started infecting me with poison.
After I was done with meds, I walked a few laps around the infusion center to get my BP back up. No way was I giving them a reason to keep me any longer!
Friday night wasn't bad. I ate. All good. Nausea was minimal.
Saturday consisted of lots of sleeping. Tried to eat, but didn't get much down. Nausea was a little worse.
Sunday, Neulasta shot at 8:30 am at a hospital an hour away, which meant we had to get the kids up at 6:30. Fun. Did a quick shopping trip through Dollar Tree, picking up only what I needed, leaving behind anything that looked like it could contain the flu bug. Much hand sanitizer was used. We got home to find our power out. It stayed out for, what, 5 hours? Grilled some burgers. YAY for protein! I napped. The kids played outside. Ate some chicken & rice. Some came back for round two. Nausea varies depending on position. As long as I don't turn my head from side to side, stand up, sit down, turn around, or walk, I'm okay ;)
So, tomorrow, I fully expect some sore bones. If not tomorrow, in the coming days. I'm sure those days will consist of lots of heating pads, pain meds, and naps. Hopefully the little guy cooperates.
Upcoming appointments:
Wednesday, Jan 16 - Radiation Oncologist to discuss possible radiation
Friday, Feb. 1 - Chemo #4 - quite possibly the LAST ONE!
2-3 weeks after chemo, repeat PET scan to see what's left (hopefully NOTHING)
Peace out...
Suzi
P.S. Excuse the rambling, run-on sentences, and occasional misspelled word. My Ambien is kickin' in!
Tuesday, January 1, 2013
Ramblings Of An Insomniac
Hi, my name is Suzi, and it's been 10 days since my last blog.
Man, I suck at blogging. Well, I guess by the title, one would suspect it's just a blog about cancer. But since there isn't much new in the world of MY cancer, there hasn't been much to blog about.
What's new in cancer news?
On Sunday, December 23, I got my Neulasta shot, which boosts white blood cell production. The shot "may cause long bone pain". Yeah...I hurt so bad, I could barely move. I felt like someone was trying to break my pelvic bone in half. Thank God for Oxycodone.
Yeah...that's it. Nothing else new. Just trying to stay healthy in the midst of flu season. So far; so good. Next chemo treatment is 1/11/13, which also includes a visit with the onco doc.
What else has been going on, you might ask? Oh, you didn't? Tough. My blog; my rules.
Winter break is over. We all survived without killing one another. The kids were well-behaved for the most part. Christmas came & went. We all had a wonderful day. NYE came & went. We all had a wonderful 2012. Yada yada yada.
I'm tired. I can't sleep. Cancer is supposed to make you weak and tired. I'm always sleepy at the wrong time. I have plenty of medicine that would help me go to sleep right now. I just don't want to be that girl who gets the "I survived cancer and all I got was a lousy addiction to sleep meds/pain killers/Ativan" shirt. Nathan says to try to count sheep. When I close my eyes, I cannot, for the life of me, think of what a fucking sheep looks like.
What else is new? Oh, the dishwasher quit. And, no, I don't mean Nathan. Yesterday (well, Monday, to be exact), I loaded that SOB down with breakfast & lunch dishes. When I turned it on, it made a noise. I opened it, peered inside like I knew what I was looking for, and slammed it shut again. When it started, it sounded fine. Flash forward four hours or so...I opened the dishwasher to find steam, near-boiling standing water, and saucers so hot I needed a pot holder.
Apparently, Handy Husband attempted to disassemble it while I was in the bathtub, and all he got was a cut on the finger (which we shall hear about from here to eternity).
Screw it...I'm going to take an Ambien.
Man, I suck at blogging. Well, I guess by the title, one would suspect it's just a blog about cancer. But since there isn't much new in the world of MY cancer, there hasn't been much to blog about.
What's new in cancer news?
On Sunday, December 23, I got my Neulasta shot, which boosts white blood cell production. The shot "may cause long bone pain". Yeah...I hurt so bad, I could barely move. I felt like someone was trying to break my pelvic bone in half. Thank God for Oxycodone.
Yeah...that's it. Nothing else new. Just trying to stay healthy in the midst of flu season. So far; so good. Next chemo treatment is 1/11/13, which also includes a visit with the onco doc.
What else has been going on, you might ask? Oh, you didn't? Tough. My blog; my rules.
Winter break is over. We all survived without killing one another. The kids were well-behaved for the most part. Christmas came & went. We all had a wonderful day. NYE came & went. We all had a wonderful 2012. Yada yada yada.
I'm tired. I can't sleep. Cancer is supposed to make you weak and tired. I'm always sleepy at the wrong time. I have plenty of medicine that would help me go to sleep right now. I just don't want to be that girl who gets the "I survived cancer and all I got was a lousy addiction to sleep meds/pain killers/Ativan" shirt. Nathan says to try to count sheep. When I close my eyes, I cannot, for the life of me, think of what a fucking sheep looks like.
What else is new? Oh, the dishwasher quit. And, no, I don't mean Nathan. Yesterday (well, Monday, to be exact), I loaded that SOB down with breakfast & lunch dishes. When I turned it on, it made a noise. I opened it, peered inside like I knew what I was looking for, and slammed it shut again. When it started, it sounded fine. Flash forward four hours or so...I opened the dishwasher to find steam, near-boiling standing water, and saucers so hot I needed a pot holder.
Apparently, Handy Husband attempted to disassemble it while I was in the bathtub, and all he got was a cut on the finger (which we shall hear about from here to eternity).
Screw it...I'm going to take an Ambien.
Saturday, December 22, 2012
Chemo - Round 2
Yesterday morning, Nathan & I dropped the kids off at the neighbor's house bright & early and headed to my second round of chemo.
After drawing blood, they sent me up to see the doc. He didn't have much new to say. Basically he just addressed some issues I'm having (sore feet & insomnia) and sent me on my way. He did say that my potassium is low and that my hemoglobin is getting to the point where I have to start watching for symptoms like shortness of breath, pale skin, fatigue, rapid heart rate, etc. If it gets lower, I may need a blood transfusion. Fun!
Back in the infusion center, my nurse started pumping me with fluids. Her evil plan to make me exercise (by walking back & forth to the bathroom) was once again successful. 5 trips this time! The chemo meds weren't too bad, other than the awful taste. In case you didn't know, some people can taste meds given via IV. I can even taste the Heparin she gives me at the end. YUCK! Thank goodness for Jolly Ranchers!
Yesterday afternoon, I had a few bouts of severe nausea but never got sick. Today has been much the same. I slept until 11 & then had a wonderful day with Nathan's dad, stepmom, and brother. They brought half of Toys R Us to the kids. We spent the afternoon & evening watching the 3Es play in the middle of the living room floor. It was so great! LOVE my babies!
After drawing blood, they sent me up to see the doc. He didn't have much new to say. Basically he just addressed some issues I'm having (sore feet & insomnia) and sent me on my way. He did say that my potassium is low and that my hemoglobin is getting to the point where I have to start watching for symptoms like shortness of breath, pale skin, fatigue, rapid heart rate, etc. If it gets lower, I may need a blood transfusion. Fun!
Back in the infusion center, my nurse started pumping me with fluids. Her evil plan to make me exercise (by walking back & forth to the bathroom) was once again successful. 5 trips this time! The chemo meds weren't too bad, other than the awful taste. In case you didn't know, some people can taste meds given via IV. I can even taste the Heparin she gives me at the end. YUCK! Thank goodness for Jolly Ranchers!
Yesterday afternoon, I had a few bouts of severe nausea but never got sick. Today has been much the same. I slept until 11 & then had a wonderful day with Nathan's dad, stepmom, and brother. They brought half of Toys R Us to the kids. We spent the afternoon & evening watching the 3Es play in the middle of the living room floor. It was so great! LOVE my babies!
Wednesday, December 12, 2012
Bone Marrow - CLEAR!
Today, I had to go in for blood work & a quick visit with the oncologist. He is very happy with my progress so far. The swollen node in my neck is visibly smaller, and my cough is gone! This means the first chemo treatment did exactly what we hoped it would do: started shrinking the tumor! WOOHOO!
Doc said my labs look great. I'm showing no signs of Tumor Lysis Syndrome, which would mean my body is having trouble getting rid of the dead/dying cancer cells. My kidneys are functioning just as they should, so he's happy with that (as am I). I have to continue on Allipurinol (for uric acid) until my next treatment, but should be able to discontinue it if my kidneys can keep up.
The long-awaited results of my bone marrow biopsy show that there is NO BONE MARROW INVOLVEMENT! WOOHOO! This means that my cancer is officially Stage II B. My International Prognostic Index (IPI) score is 1. Each point 0-5 is a poor prognostic factor. I have one, which was high LDH (lactate dehydrogenase). He said it's barely high, but still high. A score of 1 is considered the low risk group. You can read more about IPI at this link, but let me assure you, it's good news!
So, with the good news of the bone marrow biopsy, our current plan remains pretty much unchanged. 3 more chemo treatments and then a repeat PET scan. That scan, along with a visit with the Radiation Oncologist, will determine whether more chemo and/or radiation are needed.
Upcoming appointments:
12/21/12 (maybe...Mayans?) - blood work, oncologist check-up, chemo treatment
12/23/12 (yes...a Sunday) - Neulasta shot (to boost WBC production...and make my bones ache just in time for Christmas)
12/23/12 (yes...a Sunday) - Neulasta shot (to boost WBC production...and make my bones ache just in time for Christmas)
Monday, December 10, 2012
(Almost) Bald Is Beautiful
Several of the medications in my chemo regimen cause hair loss. It's not a matter of if my hair will fall out, but when it will. I've read/heard different time tables...anywhere from 10 days past the 1st treatment to right after 2nd treatment. Since my hair was down past my shoulders, I worried about the mess that would come when it starts falling out. I've heard that it doesn't fall out a few strands at a time. It's like your hair follicles just open up and your hair runs away screaming.
So, in order to avoid as much of the upcoming mess as possible, and in order to prepare the kids (okay, and myself) for the shock of bald Momma, I decided to take matters into my own hands. My sweet hubby stopped by and talked to the lady who normally cuts my hair last week. (Big confession...I don't pay huge prices to get my hair done. I go to Great Clips. LOL!) She said she would be honored to shave me bald. How sweet! She even offered to come out to the house to shave it for me so we could avoid crowds/gawkers.
After much discussion, I decided that Saturday was the day. 8 days post-treatment. After a great visit with (one set of) the ILs, I tried to take a nap. But as I lay in bed, tossing & turning, I started to chicken out. I got up & told Nathan we had to leave immediately...before I decided against it.
Before we left, I read the kids a new book we got called "Mom Has Cancer". It's a great little picture book that explains a lot.
As we walked across the parking lot to the hair place, my heart was pounding. I was more nervous about walking through that door than I've been any other time during this whole ordeal. Well...maybe with the exception of the port placement.
We picked a great time to go. There was only one customer there, and my hair lady was almost done with her. We sat for a few minutes, and then it was my turn. My hair lady confessed that she was very nervous, having never done a buzz cut on a woman. I told her that we could be nervous and possibly cry together.
Here I am, gearing up for the big cut!
I love it, except for that whole cold head thing. Thank goodness for caps & scarves!
So, in order to avoid as much of the upcoming mess as possible, and in order to prepare the kids (okay, and myself) for the shock of bald Momma, I decided to take matters into my own hands. My sweet hubby stopped by and talked to the lady who normally cuts my hair last week. (Big confession...I don't pay huge prices to get my hair done. I go to Great Clips. LOL!) She said she would be honored to shave me bald. How sweet! She even offered to come out to the house to shave it for me so we could avoid crowds/gawkers.
After much discussion, I decided that Saturday was the day. 8 days post-treatment. After a great visit with (one set of) the ILs, I tried to take a nap. But as I lay in bed, tossing & turning, I started to chicken out. I got up & told Nathan we had to leave immediately...before I decided against it.
Before we left, I read the kids a new book we got called "Mom Has Cancer". It's a great little picture book that explains a lot.
As we walked across the parking lot to the hair place, my heart was pounding. I was more nervous about walking through that door than I've been any other time during this whole ordeal. Well...maybe with the exception of the port placement.
We picked a great time to go. There was only one customer there, and my hair lady was almost done with her. We sat for a few minutes, and then it was my turn. My hair lady confessed that she was very nervous, having never done a buzz cut on a woman. I told her that we could be nervous and possibly cry together.
Here I am, gearing up for the big cut!
Now we're halfway there...
WOW...
They were left with this big pile to clean up...
Bald is beautiful! Thank you, Amy!
The only person who cried was the other hairdresser in the shop. We all stayed strong!
Emory loves my new cut. He says, "I will love you even if you don't have any hair."
Evie likes it, and even asked if she could cut all her hair off.
Emmit hates it. He wouldn't touch my head, and informed that I am not allowed to pick him up at school unless I wear a hat.
Nathan says it looks pretty cool.
Emory loves my new cut. He says, "I will love you even if you don't have any hair."
Evie likes it, and even asked if she could cut all her hair off.
Emmit hates it. He wouldn't touch my head, and informed that I am not allowed to pick him up at school unless I wear a hat.
Nathan says it looks pretty cool.
I love it, except for that whole cold head thing. Thank goodness for caps & scarves!
Wednesday, December 5, 2012
I Have Cancer
I have cancer.
I have non-Hodgkin's Lymphoma.
I have Stage II-B Anaplastic Large Cell Lymphoma.
I have cancer.
It doesn't matter how many times I say it. It doesn't matter which words I use. It still sounds like I'm talking about someone else. I know it's real. I know it's inside me. I feel bad. I have who knows what kind of poison running through my body attacking this shit. But it just doesn't seem like I, Suzi Mitchell, could possibly be talking about myself when I say the words "I have cancer."
I guess it'll really sink in later. Maybe when all my hair falls out. Maybe when I go for my next round of chemo. Maybe when I hear the word "remission". Who knows. I'm sure it'll sink in at some point.
I have non-Hodgkin's Lymphoma.
I have Stage II-B Anaplastic Large Cell Lymphoma.
I have cancer.
It doesn't matter how many times I say it. It doesn't matter which words I use. It still sounds like I'm talking about someone else. I know it's real. I know it's inside me. I feel bad. I have who knows what kind of poison running through my body attacking this shit. But it just doesn't seem like I, Suzi Mitchell, could possibly be talking about myself when I say the words "I have cancer."
I guess it'll really sink in later. Maybe when all my hair falls out. Maybe when I go for my next round of chemo. Maybe when I hear the word "remission". Who knows. I'm sure it'll sink in at some point.
Saturday, December 1, 2012
Stage II B
Yesterday, my oncologist met with us before my first chemo infusion. While we're still waiting on the results of the bone marrow biopsy, he has gone ahead and staged my lymphoma. Stage II B. Stage II means the cancer showed up on the PET scan somewhere besides the main tumor. It is also in a few lymph nodes on the right side of my neck. B means I'm having other symptoms, like drenching night sweats and weight loss. Once the bone marrow biopsy results come back, the stage may change, but it doesn't change the early treatment plan. It'll just let us know if there's more cancer to fight. He said it's likely that there is some in the marrow, as I am anemic, but he's hopeful there's nothing there.
My first chemo treatment went well. The longest part was getting fluids. They apparently wanted to make me spend most of the day walking back & forth to the bathroom. Their evil plan worked. I made 6 trips to pee while we were there. The three chemo meds only took about an hour. One was an hour long drip. The other two were pushed via syringe. It wasn't so bad, except for the strange tastes in the back of my mouth.
I slept all day yesterday and all night last night. I've been tired today, but I ate a giant plate of spaghetti. It was divine. After having eaten very little over the past 2 weeks, that huge plate really hit the spot. And thankfully, it has stayed in that spot.
Nathan has been awesome with the kids. I can tell they are testing his patience, but he's doing great. They don't understand what all is going on, so they are up to their usual badness.
Thanks for your continued thoughts & prayers.
My first chemo treatment went well. The longest part was getting fluids. They apparently wanted to make me spend most of the day walking back & forth to the bathroom. Their evil plan worked. I made 6 trips to pee while we were there. The three chemo meds only took about an hour. One was an hour long drip. The other two were pushed via syringe. It wasn't so bad, except for the strange tastes in the back of my mouth.
I slept all day yesterday and all night last night. I've been tired today, but I ate a giant plate of spaghetti. It was divine. After having eaten very little over the past 2 weeks, that huge plate really hit the spot. And thankfully, it has stayed in that spot.
Nathan has been awesome with the kids. I can tell they are testing his patience, but he's doing great. They don't understand what all is going on, so they are up to their usual badness.
Thanks for your continued thoughts & prayers.
Thursday, November 29, 2012
My Diagnosis
I know the announcement of my diagnosis came as a shock to most of you. It's been such a roller coaster the last few months that I just haven't said much to anyone. But my awesome hubby sat down with me yesterday (or maybe it was the day before) and helped me write down the timeline for everything so I could share it with you all.
(Please excuse any typos. I am on some good meds tonight.)
The week of August 20, I started having pain in my shoulder/back. I thought it was caused by sleeping funny. I used countless products (patches, creams, etc.) to help ease the pain, but nothing quite took it away. But I sucked it up so we could take our family vacation to Gatlinburg! Oh, we had a blast. The kids were well-behaved, we had an awesome visit with my momma, and the scenery was absolutely amazing.
While we were in Tennessee, I battled the shoulder pain. On Wednesday, August 28, I woke up and was rubbing around on my neck & shoulder and found a lump just behind my collarbone on the right side. My mom & Nathan both felt it, and we blew it off as a tight muscle or something since my shoulder had been hurting. But I vowed to call the doctor as soon as we got home to make an appointment to see him if it hadn't gone down.
On September 4, I saw our family doctor. He felt the lump, but remained calm. He ordered bloodwork & said we'd wait & see. The nurse called to tell me my bloodwork came back a little "off" and said the doctor wanted to repeat it. On September 10, we did more bloodwork and the doctor ordered an x-ray of my chest. On September 12, I went for my first x-ray. It came back clear, and we all breathed a sigh of relief, although we still had worried in the back of our mind.
On October 24, I went to the doctor again. I was still having pain in my shoulder, the lump was still there, and I had developed a cough. The doctor said the cough was going around (it was...everyone had one). He decided to put me on an anti-inflammatory to help my shoulder pain, and he ordered an ultrasound.
On November 2, I had an ultrasound of the lump. We're not sure what happened, but somehow the lymph node got measured and reported as 5mm. At 5mm, a lymph node is not considered worrisome. On November 13, I went back to the doctor's office WITH Nathan. We were determined that we wanted answers. The doctor sent me for blood work and an x-ray that afternoon. He also started me on an antibiotic just in case.Before I even got home from the x-ray, the phone rang. It was the nurse. She didn't give any details, but said that the radiologist and doctor had talked and I needed to go in for a CT scan. She scheduled it for me for November 15.
I had only been home for an hour or so after my CT scan when the phone rang. It was my doctor's office again. They had made me an emergency appointment with an ENT for that afternoon. We hurried & went to pick up the DVD and report from the imaging office and went to the appointment. She was very concerned. My lump was NOT 5mm. It measured at 7.5 cm x 4.8 cm x 5.6 cm. It involves a lot of major blood vessels, and is pressing into the top of my right lung. She ordered a biopsy.
On Monday, November 19, I checked into the hospital for a CT-guided lung biopsy. They had to go in through my back because of all of the vessels involved.
And then we waited. Holiday weeks are not good weeks to have biopsies done. My awesome ENT called to check on me, and gave us both her home & personal cell numbers with a list of symptoms to look for which would mean the tumor (first time she used that word) has grown bigger & was causing something called SVC syndrome (obstruction of the superior vena cava).
On Monday, November 26, I had had enough waiting. I called the doctor's office and asked for test results. The reception called back and said that the doctor did have the initial pathology in, but wanted to talk to us in person. I called Nathan to come home from work & we went.My mom went with us to the ENT. I can't even say how much her support meant. Just her being there in the office was a huge comfort. The ENT walked in, sat down, and I could tell by the look on her face that she didn't have good news. She told me I have a form of non-Hodgkin's Lymphoma. I do have a positive marker for something, which means my lymphoma will respond better to chemo.
The ENT made me an appointment with an oncologist. Thankfully he's awesome & is much closer to home (a 20 minute drive instead of an hour).On November 27, we met Dr. Raddin for the first time. He was amazing. He sat and explained things. My appointment lasted almost 2 hours. He is most concerned with the rapid growth of the tumor and SVC syndrome. It's dangerous to try to remove the tumor, so we need to shrink it...FAST!
My official diagnosis is Anaplastic Large Cell Lymphoma (ALK +). We don't know the stage yet.They immediately set up every appointment I needed and scheduled my first chemo treatment for Friday. I can't believe it's happening so fast.Yesterday (11/28), I had an echocardiogram, a CT scan of my abdomen, and a PET scan. Today (11/29), I had a CT-guided bone marrow biopsy and a port put in my chest for chemo. The doctor called tonight to tell us that the PET scan didn't show any cancer anywhere else (HOORAY!), but I am anemic, so that is concerning. He said the bone marrow biopsy will be in next week sometime, but the results (is there cancer in the marrow or not) will not change the kind of chemo I will get.
Tomorrow morning, I have to be at the cancer center at 8 AM for my first infusion. I'll then have chemo every 3 weeks. I will have between 4 and 6 treatments. Radiation may be necessary, but we'll have to wait & see.
So there it is. The story of my diagnosis.
We appreciate all of your thoughts, prayers, phone call, and emails.
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